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malignant paraganlinoma

wontquit15
Posts: 6
Joined: Sep 2007

Hi, Iam a 26 year old male with malignant paraganlinoma. I have been through exttensive chemo and have had a very good reaction. Just finished up with my first round of raydation. I was just wondering if there was anyone out there with any good information on this illness.....Thanks James

coltfanforlife
Posts: 2
Joined: Sep 2007

Hi, I suffered from the same thing. The great thing is I found this incredible e-book called Cancer: One Disease, One Cause. This book will tell you everything you need to know about cancer and how to eliminate it. Go to www.ejayproducts.com and order it.

wontquit15
Posts: 6
Joined: Sep 2007

hey thanks for the referance I will be sure to pick that up....Thanks James

TereB
Posts: 288
Joined: May 2003

Hi,
I have malignant paraganglioma. It that what you have or yours is different, nothing to do with spelling?
TereB

wontquit15
Posts: 6
Joined: Sep 2007

Hi, yes that is what I have, just wondering how have you been being treated and what has the results been, thanks James

TereB
Posts: 288
Joined: May 2003

I am still not sure if we have the same thing. For malignant paraganglioma first you need to have a tumor in the head/neck area that has metastized. Is that what happened to you? If not, we have different diseases.

I'll be happy to provide information if we have the same thing. Otherwise, whatever I tell you will not be of any help to you. Mine started with a glomus jugulare tumor in my head. There are also carotid body tumors that are similar.

All the best,
Tere

wontquit15
Posts: 6
Joined: Sep 2007

Hi, yes we have the samething mine started with a banine tumor in my cheak which from what i read is alittle uncommon because they are usally first start in the neck.

But i have tumors that have metazied in my spine, lung, and pelvis. I also had two on my skull that were eleminated with raydation.

But the mass in my abdoman is still to large to remove, the chemo is working to shrink it and lower the suv's, but still the surgery is to risky for me. just was wondering what you have been counseld on....thanks again for your attention and hopefully future help....thanks..James

TereB
Posts: 288
Joined: May 2003

Hi James,
I'm not sure if we have the same thing. Unfortunately, paragangliomas cover many things. One reason I think we do not have the same thing is that you had chemo treatments and there is no chemo for me. Actually there is only one chemo drug but it is old and doesn't eliminate the tumors, only shrinks them so my oncologist suggested that we wait until it is absolutely necessary.

Paragangliomas are generally benign, slow growing tumors. They are not common either. Did yours started in the adrenal gland?

Mine is a glomus jugulare tumor that started in the head, ear area. I had surgery for that one but it grew again. After that I've only had radiation which has worked well for me, even if the tumors do not disappear.

I have metastases all along my spine, neck, pelvis, sacro and many small ones in the lungs. I was diagnosed in 1987. I do not have any mass in my abdomen. In general I feel fine but I have to have an MRI and CT scan every few months to check for growth of the old ones and to see if there are new tumors. For some reason, nobody knows why, sometimes my tumors go dormant and do not grow at all. Once two big tumors shrank all by themselves without treatment.

I'm not sure if the little information I provided can help you. I hope all goes well with you.

Take care.

wontquit15
Posts: 6
Joined: Sep 2007

Hi, Yes I think it may be a strong chance we have the same thing. My cancer stared with a bening tumor in the face. Maybe this will decide i have small blue cell tumors. 4 on my spine 1 on the lung two on the skull. You may have already tried this but you can go online to the cancer collage and there is were i have been able to find the most information.

The chemo I had has proven to be very succesful. It is known as CVD chemo, it shrinks the trumors radiply and drasticaly lowers the suv's. With limited side effects. They Just started using this at UCLA Hospital in 2002, So it is still rather new, but in the 5 cases I have read, including one other guy in my town, have been proven very effective...ok thanks and glad to hear to you have been doing well for so long!

Thanks, James

There

TereB
Posts: 288
Joined: May 2003

Hi James,
Thank you for the information about the CVD chemo. I will check with my oncologist next month when I ssee him.

Take care!!
TereB

daddysnurse
Posts: 1
Joined: Jul 2009

Hi Tere,
my dad was diagnosed with right carotid body paraganglioma that has metastasized to a few lymph nodes. i would love to get as much information as possible, since there is so limited info supplied by his drs. thank you. i hope you are feeling well.
sincerely,
jen

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